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Tuesday, June 14, 2016

Thoughts on #DiabetesAccessMatters From the Airport

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Here I sit, in the New Orleans airport waiting for my flight
back home following the ADA’s biggest diabetes meeting of the year.

I've got some personal thoughts to share.

This isn't a professional recap of anything, just a line to
what's going through my head and heart here at the moment. More
professional, balanced writing and analysis will occur elsewhere, in due
time.

My mind is swimming with so much information and there's so much to process on so many fronts. While this
ADA event leaves me hopeful and inspired in so many ways about the state of
things, it also leaves me a bit unsettled and sad.

In many ways, I feel powerless to move the needle on
change when it comes to making sure people have access to the tech and treatments
and tools they want to use.

#DiabetesAccessMatters was a big topic on everyone’s mind at
ADA.

No doubt, the United Healthcare and Medtronic partnership in early May was a hot-button issue that got attention and drew broad discussion going beyond just those two companies. It came up so many times, officially and unofficially. Key
leaders and groups are working on this, having discussions with MedT and
other industry players. They’re talking with insurance companies. They’re
looking at how the D-Community can coordinate and do more to persuade payers
not to limit our choice and access.

Many of us who were there sounded like a
broken record, expressing our frustration and disappointment – talking to tech
company folk and doctors and regulators and so on to make sure they know how we
feel.

They do.

I’m happy about that.

Everyone's trying to figure out "What's Next?" and what we do, but there's nothing black and white about any of this. It's all so damn complicated and has a lot of moving parts. So
much is dictated by unintended consequenes of federal and state laws,
how businesses are responding to the whole healthcare game, how digital health data can be used most effectively to guide decision-making and help get people heather. It’s not easy to
figure out this stuff.

What gives me hope is that some of the brightest minds that I've ever seen in diabetes, healthcare, policy-change and frankly the world are on this.

And then I go online and see people in this Diabetes
Community saying “Oh, advocates aren’t advocating on #DiabetesAccessMatters. It
must not matter to them.”

Since it's now been just over a single month since the UHC-MedT partnership came to light (thanks to a smaller competing company's red-flagging), the fact that no concrete answers have been publicly outlined and nothing's "fixed" must mean this just got swept under the rug.

Fuck.

Since I am at the airport right now, I kind of want to go put all my Internet-connected onto a runway and just have them run over, to get away from that crap. Seriously? How goddamn naïve.

Don't misunderstand: I'm not mad about people being mad about things not moving faster. I wish they did. Of course. I am not mad about people voicing their opinions. That's what #1 is all about. What gets under my skin is those who decide to start questioning advocacy, saying nothing is happening or it's just forgotten about because it hasn't been shared on social media or anywhere else for that matter.

Shit is happening, and it’s happening by those who ALSO
don’t know what the fuck to do about this or how to change it. But they’re
asking questions, working to coordinate effectively, and make a lasting change
in this area that goes beyond diabetes.

And with that, it’s where my heart shifts a bit…

Because despite all that’s happening behind the scenes, I
feel so helpless. That with all this talk of coordination and change, we’re not
able to make anything happen. It’s not us calling the shots, it’s the payers.
Everything in diabetes tech and treatment these days is about making sure PWDs
can use these tools correctly and effectively, achieving better outcomes and
getting to a good healthy quality of life.

I've seen some friends express similar feelings (as I'm sure others have), and I have to echo that I'm feeling a lot of the same helplessness about this -- even though it's only been a month or so and despite all the conversation that is happening.

That desire for data-driven outcomes is what’s pushing these
UHC-MedT style decisions forward, and those are going to continue because
that’s the reality of the world now (at least the first world, where people can
afford this shit).

Many globally can’t and that’s a whole other – somewhat
related? – topic on access in itself, and it all makes my mind just start
drowning again.

Insulin costs way too fucking much.

Devices do, too.

People at insurance companies who aren’t on my medical care
team are second/third/quadruple guessing my doctor-ordered treatments. They’re
saying I only have access to what they think will do better for me, based on
dollar signs instead of my own health and choice and medical guidance.

They want my A1C lower, but want to limit the amount of test
strips I use each day – thereby screwing with my chances of lowering A1C .

Assuming I live long enough to get to Medicare, my access
and choice is limited even more just like all those who can’t get certain
pumps, CGMs, best medicines or enough supplies now. But hey, that’s OK… they’re
hedging bets that we’ll just die soon anyhow, so WTF does it even matter?

Anyhow… ranting aside.

I will continue to do what I can from my little corner
booth.

If that means not being a customer of these companies that
are pulling strings and not standing up for full choice and access across the
board, so be it. If they don’t get that they play in a sandbox and must nurture
the ecosystem in order to best make people healthy, then they don’t get my
business. And they get my condemnation.

I will tell anyone I know about how I feel about this. That includes diabetes advocacy orgs that are collecting our stories, my elected leaders, insurance policy-makers, and my medical care team. I’ll
encourage the company I work for, as well as others that are and will continue
to be in the insurance-shopping business, not to choose UHC or other insurers
who blatantly adopt these money-driven policies.

It may not be much and it may not change the game, but it
makes me feel like I’ve accomplished something. And maybe that’s all I’ll be
able to do for now, before the eventual day when I won’t have a choice about
making a choice and will have to go silently along with whatever’s forced upon
me.

And now, I have 10 minutes to board the plane. Maybe the sky-high view between Louisiana and Michigan will bring a little wisdom, or something (probably not, as I'm flying Spirit that makes me pay more for everything)...

1 comment:

Mike, I think I have such a different concept of this, it is difficult to believe I am in the same community. I do believe access matters, and I believe that insulin prices are too high. I do see folks advocating for these issues and trying hard on our behalf.

What I do not think is that there will be quick or even lasting answers. Change, even the change we dislike, never happens overnight, it just seems that way when we are on the receiving end.

What I know is that change happens slowly maybe we need to get some folks a copy of the book Tipping Point.

I referred your blog to the TUDiabetes blog page for the weekof June 13, 2016.

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